PMRGCAuk
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Update!

So after my post a couple of months ago about my GP wanting me off the pred - getting her to let me keep going on a low dose but this was to be the end of it - (PMR disgnosed in Apr/May 2016) even though I was in a bad state. I went last night to get a prescription - told her I couldn't get right down and actually had to increase a bit to 5 for a while - she has reluctantly agreed to allow me (at my suggestion!!) to reduce by 0.5mg to see if that will get me off it. I told her how bad I get, physically even, when the dose is low - the nauseating fatigue so bad I can barely string a sentance together and the pain. She had no interest whatsoever in this and certainly no suggestion of getting my adrenals checked. Her reluctance to let me keep going on the pred for a while is awful as she isn't even listening to me when I say that this PMR can last much longer than 12/18 months. She said I could just be in the "rare" group that it will last for 18 months. (My rheumy had taken me off the pred at circa 12 months with absolute disastrous results). This post is really just to show how these people are so ill informed and will not listen to the person who is going through the pain. I came out so frustrated that she was basically ignoring everything I was saying. Her attitude was that she is doing me a big favour. Not like we want to be on this stuff for goodness sake. Sorry for the rant - its just so dishertening to have to keep battling all the time.

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Oh dear powerwalk what an unsympathetic person. Is there a way you can see another GP in the practice? Or better still another Rheumy? Even if you have to get a private appointment at least it would give you another opinion.

If you tell us the area you live I'm sure somebody will recommend one.

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yes thats my next step - going to see how I go on this reduction and then ask for a referral to a different Rheumy next time. One girl did recommend one in the SSC here in Dublin. It just takes over your life this pred stuff. Seriously is it better to be literally unable to move?? Obviously is in their opinions! Thank you for your reply - I know many of us here have these battles.

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Don't wait. Find someone and schedule an appointment now.

Useless suffering is useless.

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Yes - just going to ride out this lot of pred as they should hold me and then if things aren't right - I'm going to move it on somewhere else - I don't think she'll give m any more pred anyway without seeing a rheumu - but I won't be going back to the original one who took me off the pred at 12 months. Seriously off the wall stuff! Thank you.

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Couldn’t you just cry with the frustration of it all?

Whatever happened to working WITH the patient? Trying to help? And not making lives worse?

Definitely think that you need an informed doctor. And one with a little sympathy would be a bonus.

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It was like talking to a dummy - just no reaction. Like talking to yourself!!

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Ha! That reminds me of one of my GP visits, when I came back hubby asked how it had gone, my response...

“I might as well have spoken to the dog!”

At least the dogs wag their tails and give me ‘kisses’.

You have my empathy powerwalk. I’m quite sure these surly doctors make us worse. Just a little support, understanding and sympathy sets us up for success. Whereas their disinterest and obsessions with pred can wipe us out, so we have to use our precious energy to pick ourselves up, dust ourselves off, and start all over again....All together now 🎶🎶🎶

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Yes - exactly. I feel the worse for the visit. She made me feel like I was begging for heroin or something. I mean I was in there crying begging NOT to be on steroids cos of the side effects I had at the beginning - now she's acting like I'm a drug addict. Thank you.

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:( :( :(

Here, have a ((((HUG))))

YOU are the one who knows YOUR pain. You are not an addict. You have come this far and survived. You WILL win, just not today or tomorrow. Find yourself a doctor who will accompany and support your journey, as you have the proven strength to succeed. You just need some support for the last leg.

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Yes - thank you. Hug gratefully received!!

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No kidding. Feeling invalidated definitely adds to our stress which in turn causes a flare up. That's addition to stress with having to start looking and researching new doctors. I'm ending up at a second opinion. My rheumatologist feels that it can't still be PMR after over 10 years. However, my husband has a patient who cannot get lower than 5 mg and that is where she stays. I'm down to 6 and 5 every other day. I hope to be able to go down to five . My endocrinologist is so understanding, and deals with the diabetes along with other issues set off. She also has me on a vitamin regimen, and I'm on meds to keep my kidneys healthy. Still so hard to work with the rheumatologist who is the one prescribing the prednisone. He was very nice, and worked with me even though he thought I was too young. However, now he says that it shouldn't be lasting so long.. I just turned 60. If I went and complained now I would be diagnosed with PMR. My sed and CRP levels before the prednisone was so high as well as my CRP levels were So high. So hard to take care of the children at that point. Now they are grown and don't really know how hard it is for me. Though they don't want me to overextend myself. Haha. Wonder what it is now. It was normal when I was on the higher dose of steroids. That being said. As long as the steroids work, what choice do they have? Who cares about the diagnosis? I hope all gets straightened out for you, and it burns out in the end.

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oh thank you - unfortunately a lottery with these medical people. My "Consultant" took me off the pred at 12 months - don't know what planet she was on. I literally could not function or hardly move in her office with the pain all up my arms - she told me to "get moving". I still fume when I think of it. Good luck to you too.

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I think I would have been taking a one way ticket to Switzerland if I were taken off pred for a year!

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it was after a year on it - but I was off it for 6 weeks - just a disaster. Totally went back to where I was in the beginning. But she looked at me like I ws making it up. I couldn't even walk right. Yes very scary how quick things go back.

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Six weeks would have been bad enough!

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I think I might have managed to get moving enough to clip her ear! How appalling.

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oh you mde me giggle. Thanks

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I've had PMR for 14 years. There are a couple of others in the mid-teens as well. 5% of patients have it for life - though I still hold out hope, there are people who have stopped pred after up to 15 years...

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There is a group who meets up in NI, now I know you are in Eire, but it might just help you to make contact.

Go to PMRGCAUK (the national charity) they have the contact details on their website.

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thank you

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OMG! I'm gobsmacked! I'm new at all (and come from an American medical system), but seriously, how can this be??? Doesn't she have a responsibility to treat you? You are not"cured." What are you supposed to do?

I find this post as frightening as Trumps healthcare options... : (

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oh honestly I know - its just scary. I mean I'm paying her - not like she's giving me "free" care. I should've put the word "care" in inverted commas!! Well she thinks 18 months is "one of the few" who would still have this at 18 months as opposed to it actually being longer.

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Ask her to put you in contact with someone whose PMR went into remission in 18 months. I will be pleasantly surprised, because in the last ten years, I have yet to meet one. Yes I have met two years but 18 months.........................

Now I know this is a long, hard read, but follow this link:

pmr-gca-northeast.org.uk/as...

and then read, preferably download (it is easier to read.

The BSR & BHPR Guidelines for the Management of Polymyalgia Rheumatica (PMR)

These guidelines were prepared by a working group consisting of members of the rheumatology and general practice communities, together with patient representatives all listed and international as well.

They are officially accepted by (British Society of Rheumatologists (BSR)

Here is an extract:

Most studies agree that PMR requires 1–3 years of steroid treatment [17]. Hence, the minimum effective dose of corticosteroids should be used and alternative causes of persistent pain should be sought.

High initial dosing and rapid tapering has been shown to be associated with longer duration of therapy [18.

Perhaps give her a copy.....................

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Thank you. Yes I'll have a look at this.

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I cannot imagine anything worse than having a doctor that 1. Doesn't listen to me and 2. Doesn't have a clue of the current guidelines of the disease(s) she/he is treating me for. Such arrogance!

Good for you for advocating for yourself!!!! Next step: find yourself a better doctor and fire her a$$. (Stories like this makes me want to cuss.)

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Oh you're dead right. Maddening is putting it mild!

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The problem s/he creates by such non treatment means instead of having a reasonably comfortable life you end up wishing your life away to see the light at the end of the tunnel.

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Yes exactly!

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So true. My husband and I discussed it thoroughly before I started the prednisone treatment. I was bedridden. There was no choice, and I hate when I have a flare up and have to rest it out.

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Yes it knocks you sideways. The only good thing is you have an inkling you will get over the flare eventually. When newly diagnosed it's so hard to believe you will feel better...ever. I am glad you had Someone to help.you make that decision.

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🤬 I feel so angry on your behalf. It sounds like she should be retiring early for the sake of her patients. She has lost sight of her purpose. You need proper doctors advising you, urgently.

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Well funny you should say that - she has recently been doing a "semi retirement" lifestyle and I was just thinking really she should just give it up because she has less interest now than she ever had. Like getting blood out of a stone!

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Time for another GP methinks. She is WRONG, WRONG, WRONG!

Does she wish to argue with the Mayo Clinic experts:

medpagetoday.com/rheumatolo...

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Most definitely - my next step at the end of this steroid run is to get referred to a rheumy to get some "hopefully" proper care. As I say NOT back to the original rheumy. As I say it was actually scry how little she was listening to me! Thank you.

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Your post leaves me feeling very sad; I do hope you find a more sympathetic ear - I can't imagine how I would cope in your situation. Where is the duty of care in this scenario? All the best.

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Thank you. Yes Duty of Care - she needs to look that up!

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May I ask what medicine is pred??? Unless it's short for something I'm lost. I agree you need to find a new doctor who will listen to you no matter what you are saying because it's important that they listen to get the right meds for you!!!!

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Prednisone or prednisolone - which are two different drugs, both corticosteroids, prednisolone is the active form and must be formed from prednisone in the liver.

In the context of PMR/GCA there is no other form of drug that works (other than Actemra for GCA and currently really only available in the USA).

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I have yet to have a 2nd visit to my rheumatologist and I have a feeling she may be in a similar category to your - she wants me down really low asap. You need to fin different medical help - good luck

.

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Yes. - feel you are right. All you do - here anyway - is hand out money to these people who have no interst or anything else.

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Hi powerwalk,

My first thoughts after reading about your experience with this doc, are to go over her head, to the director of your clinic. If resources allow, a nicely worded letter from an attorney/lawyer, might get the attention of her and her superiors. Even without the lawyer, it is my experience that people do not like their behavior called into question, and your own letter to the head of the clinic might result in review of her decision, and/or assignment to another clinician.

You are not a drug addict, you are a woman with a legitimate need for a non-narcotic substance which will ease your physical symptoms sufficiently that you can have some semblance of quality of life. The fact that your doc does not know the condition for which she is treating you, is not cause for you to suffer.

If you give us her name and address, we can start a letter writing campaign to educate her about PMR! Just kidding🤓🤨

Can you tell I am feeling enraged at the treatment you have received from this person. ?!?

Kind regards, keep us informed,

Jerri

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I know - I felt like I was looking for some kind of illegal drugs. This same doctor - a few months ago agreed "we can't have you not walking" when the other consultant took me completely off the steroids - now she's as bad. I mean I'm on a low dose - 3.5mg but its enough to keep me functioning and I will be trying to do the 0.5 mg tapers. I want to be off it - but my body has different opinions!! Thank you for your reply.

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